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Living with a Chronic, incurable condition.

CallingAllAngels

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tina-rocks Contributor

tina-rocks

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I'm online and here for you.. I know you are afraid honestly I can feel your pain.

 

Be brave you can get through this. I will you to. I am praying for you.

 

HUGE (((((((HUGS)))))))) winging there way to you with a massive dose of strength. x x x x x x x x x x

 

Tina

 

 

 

 

Well, tomorrow morning (Monday) is the "big" day. Today was an awful day.

 

I think I am more scared of this NOT working than anything else.

 

I am at the end of my rope both physically and mentally.

 

Anyone who prays, please pray.

 

Allie

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metrogirl Veteran

metrogirl

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I know you said the failure rate is 67 % but that means that 33% of the people that have had it, has made them better. You could very well be one of those people that it helps. You don't know the circumstances behind the failures. Maybe those people were more sickly, maybe the doctors sucked, maybe they didn't follow doctors orders.

 

You just need to go into it tomorrow with your head held high and positive thoughts. If you are convinced that you are doomed then you will never feel better.

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CallingAllAngels Contributor

CallingAllAngels

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I know you said the failure rate is 67 % but that means that 33% of the people that have had it, has made them better. You could very well be one of those people that it helps. You don't know the circumstances behind the failures. Maybe those people were more sickly, maybe the doctors sucked, maybe they didn't follow doctors orders.

 

You just need to go into it tomorrow with your head held high and positive thoughts. If you are convinced that you are doomed then you will never feel better.

 

I am so far down I am almost level to the ground. This disease has wiped out any positive energy I have.

 

I am in so much pain today...unable to urinate without waiting 10 minutes for the flow to start, stop, start, etc.

 

I cannot take the pain medication he gave me because it puts me in Urinary Retention...I am in agony.

 

I keep saying "this too shall pass" but I wonder if getting this surgery done was a mistake.......

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metrogirl Veteran

metrogirl

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I am so far down I am almost level to the ground. This disease has wiped out any positive energy I have.

 

I am in so much pain today...unable to urinate without waiting 10 minutes for the flow to start, stop, start, etc.

 

I cannot take the pain medication he gave me because it puts me in Urinary Retention...I am in agony.

 

I keep saying "this too shall pass" but I wonder if getting this surgery done was a mistake.......

 

It's only been a couple days, give it a chance. I don't know of anyone that isn't uncomfortable after surgery. You have made it two days, it two more that will be four days, and so on. You can do this.....Give it a chanvce to work.

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CallingAllAngels Contributor

CallingAllAngels

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Update: Saw the Uro yesterday. The Interstim is not working. I had to urinate (TMI) 30 times on Sunday...my frequency is actually going up.

 

I will be facing another surgery this Monday to have the Interstim removed.

 

The next step is either medications or Botox injections that will paralyze my bladder so that I cannot urinate. I will then have to learn how to self-catheterize myself in order to urinate.

 

No way...I don't have the mental tenacity for that. I will NOT have that done.

 

I will be looking for another Uro after my surgery, and it will probably take another month to get in for a consult.

 

Sometimes, I think I died and went to Hell and somehow missed it.

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coyote1980 Rookie

coyote1980

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"My BF is not being "there" for me. When I cry in pain, he says I am being "manipulative". I am in agony, and he thinks I'm playing him. I wish he would leave, but he doesn't even have a bowl to eat out of. Fat chance. He thinks there is crying now? Wait till next month when I have this procedure...then there will be TONS of tears."

 

I had exactly the same problem with my bf. I was having anxiety attack every night, and he told me to calm the eff down. I tell him I'm having discomfort, he tell me it's going to be ok. He was never there for me. He wasn't even happy to leave his house when I needed a ride to go to the ER for severe discomfort. I think people around me are tired of hearing my IC problem. Some people(including my bf) probably think I'm faking it for attention.

 

I learned it from my experience,

Unless you actually have this illness, you will never know how living hell this thing is. It directly connects you to depression, so stay strong. I messaged you with some info, so please read.

 

Since this isn't a dying disease, doctors never take you seriously either.

It doesn't show on your appearance, so people easily think you are just a nut case or being a drama-queen.

I gained weight because of this illness because when I'm eating, I forget about discomfort, so my co-workers thought I was just being lazy and take days off for nothing while I was actually going to doctors.

 

 

"Sometimes, I think I died and went to Hell and somehow missed it. "

I feel the same way sometimes. At one point, I thought about killing myself because then there's no more pain. I had never had any depression problem before, and I was having seriously horrible thoughts every minute.

It's a newly discovered illness. New medications and new surgeries are tested everyday.

 

I am ready to try anything that comes out for IC treatment.

That's how desperate I am. I'm thinking to go to a support group.

Maybe it'll help....

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SnowFox Community Regular

SnowFox

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Coyote and CallingAA - I just wanted to say how much I feel for you. I really do. I know there are illnesses that cause people horrific, horrific pain, even in this era of all the modern medicine we have. Many people can't believe or don't want to believe that this is true, but it is. I hope that both of you will be able to find something that brings relief.

 

(((hugs))))))

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coyote1980 Rookie

coyote1980

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Coyote and CallingAA - I just wanted to say how much I feel for you. I really do. I know there are illnesses that cause people horrific, horrific pain, even in this era of all the modern medicine we have. Many people can't believe or don't want to believe that this is true, but it is. I hope that both of you will be able to find something that brings relief.

 

(((hugs))))))

 

Thank you so much!!

That brought tears to my eyes

Haha that's how weak and emotional I got since this illness started!!!

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CallingAllAngels Contributor

CallingAllAngels

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I face my 2nd surgery in 2 weeks on Monday to have this Interstim Therapy Trial removed. It was a failure. Infact, it makes it almost impossible for me to go at all.

 

My cat is sick and dying and I can do nothing to help him because I can't even help myself.

 

I ask anyone who prays to pray for me please. Thank you all.

 

This is truly the darkest of the dark.

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tiredofvampires Proficient

tiredofvampires

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I haven't been able to post for a while here, just because my own health and in particular, this condition I have that is so similar to yours (the vv) is really at crisis levels. (Only as of VERY recently.) I've been on and off here to post a bit, but I have some more in-depth thoughts to share here when I'm feeling a bit better myself and it's easier to sit (my pain is such that there's searing, burning in the tissues when I am seated, even more than at other times. This is a monstrous flare, as I was doing relatively better at the end of last year.)

 

For now, I just want to say I know exactly how nightmarish this is...how isolating and cheated it makes you feel of a normal life. How suddenly, just the idea of being out of pain and daily misery with your body would make any other problem in life seem like an occasion to party.

 

What I'd just like to say for now, is that it's very important you tell yourself some healing things while this is going on. I just got on an email support group/network very recently run by a wonderful gal who has vv and something she said in her latest mailing really, really struck a major chord with me. It was something I realized I'd thought in the past, but it got buried so many times with the pain.

 

You have to treat your body like a sick friend you love dearly.

 

For some reason...that's so hard for me to feel...it's so easy for me to be able to nurture my friends who are this low to the ground. But not myself. With myself, I feel I'm at war. I'm at war with my body, who has become an ENEMY. Every day, I wake up in an adversarial, aversive, often hateful relationship with it. I go to bed afraid of it, I'm afraid of it annihilating me all the time. Of not surviving and it winning, in a way...because this destroys so much. It takes so much of your life energy, your soul.

 

So instead of that, you have to consciously tell yourself (and not even in words only, but try to sink down into a "gut" feeling, or a feeling of it being in your bosom, the same place you feel radiant love for a lover or your kitty)..."I love you, and I'm going to do my best for you. We're in this together. I'll be here for you no matter what. I love you."

 

Every morning when you wake up, and every night, say this. Try to let it permeate your body.

 

And feel that love penetrating to the lower part of your abdomen, where your bladder is. Tell it that you know it's sick, but that you love it anyway, and then just let it be. Even place your hand there to send some love, like you would place a hand on a friend's shoulder who is crying.

 

There are many things that might help you start to feel better, so don't lose hope. Surgery is only ONE treatment, and imo, not a good place to start, nor a real answer to the underlying disorder. So this is by no means the end of the line.

 

Keep hope alive.

 

(((((Hugs)))))

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Angel_baby Enthusiast

Angel_baby

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Oh Allie I am sending soooooooooo many hugs your way!!!! I wish I would of seen this and your PM sooner! I hardly am able to get online much anymore, due to my health and/or my husband.

 

I have missed talking to you so much and I am so sorry you are having to go through this.

 

Does anyone here live with a chronic illness? I guess I should have counted my blessings when I had them.

 

Your health IS your wealth.

 

I want my OLD LIFE BACK, and THAT wasn't even so great. Just my old life. Is that too much to ask?

 

As you may remember I live with chronic health problems which cause severe chronic pain. I have Rheumatoid Arthritis, Lupus, Scolosis, Retrolisthesis, Degenerative Disk Disease, 3 Herniated Disks and now Gastritis from all my meds.

I know how hard it is Allie. The wishing for your "old life" back, the wanting to just be normal again. So many people don't realize what a wonderful thing they have called health and they take it for granted. But when that gets taken away it is such a CRUSHING blow to who you are.

 

My BF is not being "there" for me. When I cry in pain, he says I am being "manipulative". I am in agony, and he thinks I'm playing him. I wish he would leave, but he doesn't even have a bowl to eat out of. Fat chance. He thinks there is crying now? Wait till next month when I have this procedure...then there will be TONS of tears.

 

That's just not right, he should be there for YOU. Support and comfort you, be there when you need him. He's a jerk and sounds to much like how my husband is. If I show any pain, tears or weakness around my husband he will get mad. Start yelling at me and calling me names like crybaby, etc.

 

You don't need a person like him in your life. That isn't love that he is showing you Allie. He should care about you when you are in pain and at this low point in your life

 

This is my last resort...I can't go on living like this...because it's not living. It's just not.

 

I know it's so hard to cope with and wrap your mind around this. But I can let you know that you WILL learn to be able to accept your health problems. It's really hard at first, believe me I know. When my doctor told me I had Lupus and Rheumatoid Arthritis, I ran out of the office crying and angry.

 

It's hard Allie but don't give up. I know what you are going through girl and you DO learn how to live with chronic health problems.

 

I will be sending you a PM soon ~~~~~~~HugsHugsHugs!~~~~~~~~

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CallingAllAngels Contributor

CallingAllAngels

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Angel Baby......

 

So good to hear from you, and so sorry to hear of all the ailments you suffer with.

 

To lose one of life's most VITAL bodily functions, to urinate, is devestating, as sure as your disabilities are.

 

Thanks for writing hon....I have missed you and hope you are well.

 

I will be going to Long Island to see the best specialist in the US, Dr Moldwin in March. I hope I can hang on that long. I have been suicidal...

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annie24 Grand Master

annie24

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hey hun - i am really sorry. i don't know much about your condition, but i think you should see what the specialists have to say. maybe they know a new experimental treatment they can do on you. i am so sorry. please hang in here. lots of people love you, and we would never want to see you go anywhere.

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